PSN Library Files – Page 7 – Polio Survivors Network

Dr. Henry writes about “Henry’s Helpful Hints for Living with Post-Polio Syndrome”

When I was three years old, my mother became a victim of Schizophrenia. She never recovered. When I was eleven years old, I had paralytic polio. I partially recovered. These two life events were major factors in guiding my life toward a career as a physician and a psychiatrist. For at least the last decade, I have struggled with Post-Polio Syndrome (PPS). Most of you are quite familiar with all of the manifestations of that struggle. For almost six years, I have had the privilege of being the president of the Central Virginia Post-Polio Support Group, a marvelous group. As a result, I have had the pleasure and challenge to communicate with hundreds of PPSers around the world. I think I have learned a lot about PPS and the people who are living with this life changing disorder. In this article, I will attempt to share what I am calling Helpful Hints for Living with Post-Polio Syndrome. Many of these hints are similar to what is now called “mind – body” medicine. Many of them are replicated in other lists and articles. I offer these hints for your review, reflection, and response. This list represents only my opinion and is not to be interpreted as anything more than that.

Sleep: Adequate, restful sleep is a major asset in living with PPS. Successfully living with PPS usually requires more sleep than before the onset of PPS. The amount of sleep may range from 8 to 12 hours. This may be all nighttime sleep or could be a combination of nighttime sleep plus an afternoon nap. Many symptoms of PPS can interrupt the attainment of this level of sleep. Problems with pain, hypoventilation due to weakened respiratory muscles, sleep apnea, anxiety, panic attacks, and depression are common sleep disturbers. Any of these disturbers need to be evaluated and treated before sleep hygiene can be improved.
Pain: Pain and PPS are like partners of misery. Every effort should be made to eliminate or reduce pain without resorting to narcotic analgesics. A variety of pain management approaches may be tried. This might include over the counter preparations such as Tylenol, Ibuprofen, aspirin, and other non-steroidal anti-inflammatory medications. Non habit forming prescription medications

may help pain and sleep problems. Low doses of the tricyclic antidepressants and/or the selective serotonin reuptake inhibitors may help to reduce the daily pain level and improve sleep. If one has made a genuine effort at managing pain by reduced activity, more rest, and the use of assistive devices, then the use of narcotic analgesics would be more appropriate. Other pain management approaches might include moist heat as obtained in a heated pool, gentle massage, magnet applications, and even acupuncture. Heated pools should not exceed 92 degrees F. Massage should not be aggressive, and a trained professional should administer acupuncture.

Fatigue: Fatigue is probably the single most commonly shared symptom of PPS. Fatigue contributes to greater pain and sleep disturbance. I believe that intermittent down time is the most effective method of managing fatigue. Down time means lying down prone or supine. Each person has to discover what is the best balance between down time and up time for each day. For example,

spending an hour reclined every four hours works well for many PPSers. Medications to reduce fatigue have proven to be of minimal effectiveness in double blind studies. Also many PPSers do not tolerate medications well and have numerous side effects.

Respect new weakness. If new weakness is detected or experienced, respect this reality and do not try to restore strength by an exercise program. Exercising with this goal in mind will likely lead to more pain and a progression of the weakness. Most of us get enough exercise just trying to maintain the activities of daily living and trying to remain independent. Be sure that any physician or physical therapist who recommends exercise is fully knowledgeable about PPS.
Blood pressure: Maintaining normal blood pressure is most important for PPSers. Many of us experience elevated systolic blood pressure (the upper number on a blood pressure reading) after exerting some physical effort. Our heart rates may also increase during times of fatigue and minimal physical effort. If this elevation of blood pressure persists, the risk for heart attack, heart failure, and stroke increase. There are many effective medications to control blood pressure. However, beta blockers sometimes cause side effects for PPSers. The systolic pressure should be below 140 at rest and our pulse rate should be below 100 at rest.
Brain power: Utilize your brain or intellect to compensate for the increased physical limitations of PPS. This is a process that most polio survivors have been doing for years. PPS calls for an enhancement of this same process. Read more. Read some of the classics. Audio books are a wonderful way to read without tiring your brain or eyes. If your physical disability makes it difficult to hold a book or maintain a reading posture, you are eligible for the Federally funded audio (talking) books for the blind and handicapped. A simple application has to be completed by your doctor to authorize this service. I would also recommend the many benefits of owning a computer. For PPSers, the investment required to purchase a computer is usually a rewarding undertaking. You are never too old to enjoy and learn from a computer, which literally makes the world available to you.
Doctors and therapists: Find doctors and other therapists who not only know about PPS, but are interested in learning more and will listen to you. However, be cautious if a doctor tends to blame all your symptoms on PPS because we are in an age group, which is vulnerable, to many other medical/surgical problems. Your doctor should rule out other causes of symptoms that simulate PPS symptoms. Your doctor should not hesitate to refer you to an appropriate specialist if any symptoms are not explained.
Herbal medicine: Americans now live an average of about thirty years longer than our ancestors of one hundred years ago. This is largely due to antibiotics, better diagnostic and treatment techniques, improved nutrition and more prevention via vaccines. Because we have it so good, we want it even better. Thus, the herbal, vitamin, and nutrient alternative medicine business is booming. Keep in mind that the Federal Drug Administration does not have the resources to monitor these alternative products as it does prescription medications. Whether it be St. John’s Wort, Ginkgo Biloba, L carnitine, Feverfew, the various vitamins, or shark liver oil, be sure that your physician knows what you are taking and remember that with many of these products, cheaper does not always mean purity of the product. If an alternative medicine seems to be helping you, continue it. Nobody has found a consistently effective pharmaceutical treatment for PPS.
Talk to someone: Talk to someone who cares about your feelings in living with PPS. This person might be your spouse, a family member, friend, or even a professional therapist. Our support group is a healthy and welcome forum for talking about your feelings. Many polio survivors have spent a

lifetime of containing their feelings of loss and even anger. To express these feelings to someone is very difficult, but the benefit is immense.

Spiritual base: Having a faith or spiritual base that transcends the daily activities and struggles of this life can be an additional source of personal and inward strength. This pilgrimage is a personal choice, but I believe provides a greater meaning to our time in the midst of the ages.
Nutrition: Enjoying good food is still one of the pleasures of life that most of us still can do. That is the up side. The down side is that we more easily gain weight, as we are more sedentary living with PPS. The practical advice is to avoid big meals, especially at the end of the day. Eat balanced meals with some emphasis on protein content. Maintain good hydration. Good hydration assists renal and pulmonary function.
Keep your feet up: When sitting, keep your feet elevated whenever possible. Another advantage of taking intermittent down time throughout the day is the benefit of preventing or at least reducing dependent edema. Weakened leg muscles, along with reduced motor activity, contributes to dependent edema. Chronic dependent edema can lead to possible leg ulcers, deep vein clots, and phlebitis. Complications of these conditions can result in life threatening pulmonary emboli. Wearing support hose can also help prevent dependent edema.
Don’t ignore headaches: Headaches are a common sign of PPS fatigue. Have your doctor rule out other causes of headache such as hypertension, tension vascular headache, or some other medical problem. A dull daily headache is often a sign of PPS fatigue and particularly brain fatigue. Brain fatigue is often marked by word finding difficulties, mental focusing, and concentration problems. These brain fatigue symptoms are usually reversible with rest. Rest and more rest is the best treatment for the dull headache of fatigue.
Pace: Approach pacing like you would an algebraic equation. The daily physiological energy expended must equal the physiological energy stored and not exceed it. Most of us are accustomed to expending more energy than we store or acquire. If you know that a particular day’s activity will result in more energy expended, plan to spend more than one day to restore and recover that energy. Balancing this energy equation over time results in successful pacing. Pacing reaps results, but not in a few days. One should practice pacing for months and years.
Breathe well: Healthy breathing and good sleep hygiene are coupled together as I mentioned in #1. Sometimes, the muscles of breathing grow weaker with the progression of PPS. Thus, there could be an insidious onset of chronic hypoventilation, which could contribute to an overall feeling of fatigue. Also scoliosis, resulting from polio may advance with the progression of PPS and aging. This process could restrict the ventilatory capacity of the lungs and lead to hypoventilation. Measurements of pulmonary function and arterial blood gases can help to diagnose hypoventilation. Most PPSers with these problems do not usually need added oxygen, but simply improved ventilation, often only at night. Depending on the degree of hypoventilation, this condition can often be treated with a C-pap, bipap, or ventilator without the necessity of added oxygen. Actually, adding oxygen without improving ventilation can increase the risk of carbon dioxide retention in many PPSers with scoliosis or weakened respiratory muscles. Untreated chronic hypoventilation can lead to respiratory failure and ultimately death.
Extend recovery from any stress: Expect to take three to four times longer to recover from an infection, minor or major surgery, an injury, accident, or emotional upheaval. For whatever the reason, the physiological restorative processes of the body and brain are delayed by PPS. When any

of these stresses occur, plan on taking longer to recover.

Use your sense of humor: Many survivors of polio seem to possess a witty sense of humor and an upbeat approach to life. A sense of humor is a good way to remain innovative, creative, and positive. Keep using this attribute.
Sex and Intimacy: Sexual stimulation is good for the cardiovascular system. Be creative with this stimulation. The polio virus did not damage the sensory portion of the nervous system. Feelings, both physical and emotional, are still potentially available for expression and perception. Linda Van Aken and I wrote an article about PPS and Intimacy about a year ago. That article attempts to address this issue.
Be more dependent: Not only should you allow others to help, but also you should tell them how to help you. If your spouse is your main helpmate, be cognizant that he/she also gets tired. If you ask your spouse or anyone else to fetch or fix things for you, be organized about your requests and minimize their physical effort and time consumed. Simply keeping a list of your needs or requests can help conserve your spouse or helper’s energy and reduce the development of interpersonal tension. It is very difficult for PPSers to relinquish some controls, but in doing so, avoid trying to control your spouse or helper. Communicate what you want or need, but be courteous and grateful in the process.
Roll more, walk less: When walking becomes more difficult because of new weakness or fatigue, get some wheels and roll more. If you can still walk some and rise unassisted from a chair, a scooter might be advisable. A battery-motorized scooter allows you greater and safer mobility. Scooters are great for malls, touring your neighborhood, and even in parks. If your weakness is profound, an electric wheelchair is probably what you need. Most health insurance carriers will pay for most of the cost of a scooter or electric wheelchair. Even Medicare covers these devices as long as your physician orders it. Once you learn the value of electric mobility, you may want to invest in a van and a lift to be able to take your wheels wherever you go.
Use assistive devices. Many of us have found it necessary to acquire new braces, canes, and crutches in order to keep walking and maintain balance. Accepting this need may be a step back in time for some. Don’t resist this help. By all means, do anything to prevent falls. Do what is wise and necessary. Install grab bars, elevate the toilet seat, use pick sticks, and install ramps. I think it is wise to carry a cellular phone on your person (or wheelchair or scooter) at all times. Use your brain to help yourself. Only you know what you need and what may help.
Never, ever give up. During the struggle with acute polio and its aftermath, many of us were told, “No pain, no gain.” We were encouraged to overcome adversity and that it was all up to us. With PPS, we know that attempting gain will bring more pain and no real gain in the process. However, we still need to retain our persevering and hopeful approach to life. Giving up will serve no positive purpose and is a sign of depression. We should press on, but pace the race. We should be more like the turtle than the hare.
To be added when a new hint comes from you.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

June 2000.

Originally published in the Central Va PPS Support Group (PPSG)’s newsletter, The Deja View, in the June/July 2000 issue.

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The Late Effects of Polio

Rehabilitation Gazette

http://www.azstarnet.com/-rspear/effects.html

Based on data from the Center for Disease Control in Atlanta, Georgia, there are an estimated 200,000 to 250,000 people in the United States who have residual paralysis resulting from polio.

Poliomyelitis has long been considered a stable chronic disease. Following an acute illness and a period of rehabilitation, patients typically achieve a plateau of recovery that then remains stable. For the majority of polio survivors, this still appears to be true. But it appears also that as many as 25% of polio survivors may be experiencing new health problems related to their illness of decades ago. These new problems are affecting their functional ability levels, their independence, and even their economic stability. While “ordinary effects of aging” has been the most common explanation, that may not be the only process involved.

This Rehab BRIEF will summarize current writings on the late effects of poliomyelitis. While its causes are still uncertain, research points toward several possibilities. Naturally, the best direction for specific treatment programs also remains ambiguous. One thing is clear, however: today’s medical/rehabilitation community is losing familiarity with polio, and there is a growing lack of equipment and services to treat and support people who have residual paralysis from polio.

THE HISTORY OF POLIO

The disease has had many labels: poliomyelitis, infantile paralysis, Heine-Medin disease, and

curred for thousands of years in all parts of the world, but as an identified disease entity, it dates back to the late 18th century. By the 19th century it was reportedly widespread in both Europe and India. At that time polio was said to be caused by teething, bladders, or fever.

Presently it is known that poliomyelitis is an acute infectious virus disease that can be characterized by fever, paralysis, and subsequent atrophy of skeletal muscles. It has also been determined that silent (asymptomatic) infection in childhood provides long-lasting protection. The disease is spread by asymptomatic persons through the shedding of virus from the throat and intestinal tract. Dissemination of the disease is enhanced by poor sanitation, crowding, and low standards of personal hygiene.

Major epidemics occurred in the United States in 1910 and 1916. In 1916, more than 27,000 people, mostly children, were disabled and more than 6,000 died. In 1921, Franklin Delano Roosevelt contracted polio. Following his struggle to overcome the illness, he founded the National Foundation for Infantile Paralysis (March of Dimes) in 1938. As the March of Dimes searched for a vaccine and provided care for survivors, waves of epidemics spread across North America and Europe. There were serious epidemics in the years 1936, 1937, 1941, 1944, 1946, 1949, 1951, 1952, and 1954.

During this time, the pattern of polio also changed, affecting increasingly older age groups. These devastating epidemics, peaking in the early 1950’s, disabled millions of young children and mature adults.

In the early 1950’s, the March of Dimes established and funded 16 regional respiratory and rehabilitation centers at teaching hospitals around the United States to care for polio patients more effectively and economically. The centers were so successful in the rehabilitation of polio survivors that it became possible for effective long-term maintenance care to be taken over by the patients, their families, and local community resources. When the regional centers closed their facilities in 1959, there were 1,200

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polio survivors on ventilators in the United States.

In 1955, Dr. Jonas Salk developed the inactivated poliovirus vaccine (IPV) and widespread immunization against polio began. This was followed in 1960 by a live, attenuated oral poliovirus vaccine (OPV) developed by Dr. Albert Sabin. The effectiveness of the vaccines was stunning. Wherever either vaccine was used there was a spectacular decline in the incidence of polio. In 1955 there were 28,000 reported cases of polio. In 1956, after just one year of immunization, there were only 15,000 cases. From then on, incidence plunged. Between 1973 and 1981 the average annual number of reported cases in the United States was fewer than 15.

SCOPE OF THE PROBLEM

The survivors of the polio epidemics have seemed medically stable and have lived productive lives for many years. Many have required little intervention by medical practitioners.

But in recent years, a minority of these post-polio patients, approximately 25%, have been seeking medical help for a number of problems that seem to represent changes in their neurological and functional status which are not fully accounted for by the ordinary effects of aging. Many of the people these new symptoms are not particularly old. While some are in their sixties and seventies, others are in their thirties and forties or even in their late twenties. Aging does appear to play a role, but it may not be the full explanation.

Late effects of polio appear to progress very slowly and are just now coming to the attention of the medical profession. Because of this, there has been little organized activity to provide services, fund basic research, or educate the public and medical community.

The most commonly reported symptoms are:

unaccustomed fatigue,

weakness in muscles previously affected and unaffected by polio,

muscle pain,
joint pain, and
breathing difficulties.

These clinical problems naturally affect functional abilities as well. Most notably, people report more difficulty in stair climbing, walking, dressing, and performing wheelchair transfers. It is interesting to note that the people who appear to be at greatest risk of developing these problems include those who:

required hospitalization at the onset of polio, . had paralytic involvement of all four limbs,
required a ventilator, and
were 10 years or older at Onset of the disease. There is considerable diversity of opinion regarding the causes of these health problems facing people with post-polio residuals, and it is apparent that additional investigation is needed.

One of the leading hypotheses suggests that symptoms may comprise a sort of “premature aging.” A component of the aging process in normal individuals is the attrition of motor neurons. Throughout our lifespans we accrue a total loss of about 30% of our original motor neurons. The effect in most people is imperceptible. But for those who have post-polio residuals, the gradual loss, superimposed on the original loss of motor neurons due to the polio infection, may result in premature weakness.

A second hypothesis suggests that certain anterior horn cells (the cell bodies of motor neurons) in the spinal cord (these are what polio damages) may have been damaged, even though they survived and remained functional after the acute attack. In polio survivors with reduced cell populations, breakdown of these damaged cells may produce enough additional weakness to make normal activities such as walking or lifting more difficult.

Various pathogenic mechanisms have been proposed, such as an immunopathological mechanism, as probable causes of these late effects.

Still other hypotheses suggest these symptoms have nothing to do with polio, but may be caused by arthritis, disuse atrophy following illness or injury, or by pinched nerve roots and radiculopathies.

Whatever the underlying causes may be, there appears to be a significant time component. The majority report experiencing the onset of new problems approximately 30 to 40 years after the acute illness with polio. Whether this timespan represents a limit on how much unusual or excessive wear the musculoskeletal system can tolerate, the limits ofoverworked motor units, or a combination of such factors is presently unknown. Research is needed.

DIAGNOSIS AND TREATMENT:

MAJOR FRUSTRATIONS

An essential component in the management of post-polio problems is a general medical evaluation. Common medical problems must be ruled out first in the evaluation of older people with post-polio residuals Unfortunately, possible late effects of polio such as progressing muscle weakness are not well known among most physicians. It can be difficult to distinguish them from other 4egenerative disorders of muscles and joints. For example, some common musculoskeletal problems emerging late among polio survivors include osteoarthritis of the spine and peripheral joints, scoliosis, bursitis, tendonitis, osteoporosis, and myofacial pain syndrome.

Attempts to diagnose and treat these new problems can be frustrating to both patient and physician. People who develop new symptoms may be tested unnecessarily, and many say they cannot get their physicians to believe they are having difficulties. This is particularly frustrating for those experiencing rather dramatic changes but failing to demonstrate any major new findings upon physical examination. Frequently their complaints are regarded as malingering or other neurotic behavior because the physician is unable to find any definitive cause.

Early recognition, corrective procedures, and increased use of assistive devices can do much to alleviate the pain and distress caused by stabilized musculoskeletal residuals of poliomyelitis. Effective treatment programs to arrest or reverse progressive muscle weakness are not clearly defined. However, promising results have come from clinicians and researchers with expertise in exercise physiology and rehabilitation

Keeping in good general condition and taking time to rest during repetitive activities has proved helpful for those experiencing excessive fatigue. Exercise regimens carefully tailored to individual needs and functional ability have been helpful to others needing to recondition underused muscles. Caution is stressed for those partaking in exercise programs. Individuais are advised to exercise within their limits of comfort and capacity. It has been noted that overly intensive exercise programs can aggravate symptoms and in some cases cause irreversible damage.

In addition, some people have improved by paying more attention to their lifestyles, getting adequate rest, more prudently scheduling their professional and social engagements, and avoiding or better managing stress.

No drug treatment has proven effective in treating any of these late-emerging symptoms.

ADJUSTMENTS IN LIFESTYLE

One of the most frustrating aspects of experiencing new limitations after adjusting to familiar ones is the change in lifestyle that can be forced upon one by muscle atrophy, weakness, and other similar conditions. Still, to compensate for increasing functional limitations that may be associated with polio, adjustments in lifestyle often are necessary. A person who has been ambulatory without aids may need braces or crutches. A person who used braces may need to use a wheelchair. The use of a ventilator may be required at night. Certain activities that were once taken for granted may become difficult and taxing, requiring extra rest afterward.

Many people have reported a renewed anger, feeling as though they were getting polio all over again. After a long battle to achieve functional and economic independence, they enter mid-life only to discover that their lifestyles and economic stability are once again threatened.

Gerontological research and practice have shown that when a person’s level of functional independence is changed, some degree of depression is normal. Returning to the use of a wheelchair, after struggling to overcome the need for one many years earlier, may activate some forgotten emotions. More than the mainstream of aging people, however, polio survivors have demonstrated remarkable adaptability over the years. Required changes in lifestyle are a bit more likely to be met with psychological flexibility and an open mind. While professional counseling may be necessary for some individuals, adjustment is usually easier for those who share their experiences with other polio survivors, particularly through participation in mutual support groups and publications.

Research data verify that support groups throughout the country have been helpful in assisting the polio survivor to adjust to the late effects of polio. In this way, people with post-polio residuals can share techniques for having more energy, maintaining independent mobility, and managing pain.

THE CONTINUING NEEDS

OF POLIO SURVIVORS: A REHABILITATION PERSPECTIVE

The polio epidemics and the solutions they generated had an enormous effect on the development of rehabilitation medicine. In the 1950’s, polio survivors became the pioneers of new approaches and change in the public’s attitude toward people with disabilities. In many ways, polio patients paved the way. Through a combination of medical care, education, activism, and personality strengths, several generations of polio survivors have demonstrated that disabled people can be integrated into the mainstream of life and make significant contributions to society. But much of what is known about polio today was learned through experiences which largely came to a halt with the advent of successful polio prevention 20 years ago. Until recently, the majority of polio survivors have remained stable, requiring little or no medical intervention. But now that a significant number are seeking medical help for a constellation of new health problems, today’s polio survivors have a renewed need for medical and rehabilitation services. Unfortunately, today’s medical and rehabilitation community is generally unfamiliar with the ramifications of polio, and there is a growing lack of the kinds of equipment and services needed for the treatment of the late effects of poliomyelitis. There is a psychological perspective to consider as well. Along with the new physical problems affecting people who thought they had “mastered” polio, these survivors are experiencing anxiety, stress, and needs for emotional adjustments that are sometimes as great as those generated by the original polio onset. Many fear that orthotists can no longer make the braces they are used to. Home respirator users find it extremely difficult to get the parts needed to maintain their older, often outdated equipment-equipment with which most medical professionals are no longer familiar.

For many polio survivors, the return to assistive devices such as wheelchair’s or respirators challenges their independence and mobility. Others come to require attendant care to meet their daily needs or find it necessary to limit work or stop work altogether to accommodate increasing functional losses. The me kinds of grieving or mourning losses take place which accompany disablement initially, and which have been observed in the mainstream of elders.

The rehabilitation community can play a vital role in helping post-polio survivors work through the challenges.

Medically, the person may need help in coordinating medical services and obtaining assistive

devices.

Economically, help may be needed to solve problems related to insurance, third-party payments,

and income maintenance. Socially, help may be needed for those experiencing increased accessibility, housing, transportation, and attendant care needs. Psychologically, rehabilitation professionals may have to help deal with depression, “real” or

“imagined” losses of independence, and educational/vocational problems.

Vocationally, second career or late career adjustment counseling may be called for as well as job change assistance and related supportive services.

Clearly there is a need to promote appropriate education and training programs for doctors, nurses, technicians, and rehabilitation professionals regarding the needs of polio survivors as well as other respiratory-disabled and mobility-limited people. Locally, community agencies need to be ready to provide support to post-polio survivors by offering such services as attendant care referrals, housing placements, counseling, and vocational services.

USELESSLYS

SOURCES

“Are Polios Getting Older Faster” Accent on Living (Winter 1981): 3037.

Dalakas, Marinos C.. Gregory Elder, Mark Hallett, John Ravits, Michael Baker, Nicholas Papadopoulos, Paul Albrecht, and John Sever. “A Long-Term Follow-up Study of Patients with Post-Poliomyelitis Neuromuscular Symptoms.” The New England Journal of Medicine 314 (April 10, 1986): 95-963.

Halstead, Lauro S., M.D., and David O. Wiechers, M.D., eds. Late Effects of Poliomyelitis. Miami, Florida: Symposia Foundation, 1985. (Available from Symposia Foundation, 1175 N.E. 125 Street. Suite 509, P.O. Box 611875, Miami, Florida 33161. Please’ write for price information.)

Kaufert, Joseph M.. and Patricia Leyland Kaufert. “Aging and Respiratory Polio.” Rehabilitation Digest 13, no.2: 1-17.

Laurie. Gini, Frederick M. Maynard, M.D., D. Armin Fischer, M.D., and Judy Raymond, eds. Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors. St. Louis, Missouri: Gazette International Networking Institute, 1984. (Available from Gazette International Networking Institute, 4502 Maryland Ave., St. Louis, MO 63108. Please write for price information.)

Rehabilitation Gazzette 25

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PSN PTU and Patient UK info combined

PSN PTU and Patient UK info combined Read More »

LPPN Polio survivors as patients leaflet

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A Guide For Post-Polios Do’s and Dont’s General Therapies and Things to Avoid

A GUIDE FOR POST-POLIOS

DO’S AND DON’TS

GENERAL THERAPIES AND THINGS TO AVOID

The following information has been made available with the permission of the Easter Seal Society of Washington. The opinions expressed are those of the individual writers, and do not necessarily constitute an endorsement or approval by the Easter Seal Society or Polio Outreach Advisory Council or the Lincolnshire Post-Polio Network. Although it does not imply endorsement, it is provided as a service for those seeking such information. Always consult your doctor before trying anything recommended in this information or any other publication.

What follows is a general, practical guide for post-polios to use, and summarizes the current thinking about post-polio. It will be most valuable if it stimulates you to seek further and more specific information.

Take time to rest. Nap (if possible) during the day, work fewer hours, and take longer vacations. 2. If you are experiencing increasing muscle weakness, exercise only under the supervision of a knowledgeable physician.
Make sure your food intake is nutritious.
Be alert to (but not obsessed with) changes in your body, and heed your body’s signals. 5. Take note of any new symptoms plus clear or gradual changes.
Get enough exercise to prevent disuse atrophy, but not enough to produce overuse damage. 7. Learn how to pace yourself.
Prevent the secondary complications of weakness, particularly falls; this might entail the use of crutches or a cane, a wheelchair for extended travel, or braces or other adaptive equipment. 9. Avoid weight gain. Too much weight only aggravates stress on joints and muscles. 10. Consider possible adaptations to your lifestyle, even minor adjustments (changes in hobbies or modes of transportation) can help.
Do not assume that every physician fully understands post-polio problems. Educate yourself and never hesitate to ask questions.
Minimize alcohol use, particularly at bedtime. Alcohol inhibits swallowing, interferes with with nutrition, and causes falls and accidents.
Maintain a positive attitude towards your health. Accept change, adapt, and never equate your self worth with physical disabilities.
Take common colds very seriously.
Get bulk-producing fiber in your diet. Avoid stimulant laxatives.
Medical evaluation of post-polios should include a complete history, physical exam, and appropriate lab studies.
Muscle strength evaluation should be done by a registered physical therapist or someone familiar with neuromuscular disease. Muscle testing is now advised every year even if there is no obvious change.
The current recommendation is that all post-polios have a complete medical evaluation covering the three major areas affected by the polio; neuromuscular, circulatory and respiratory. 19. Problems with extremities or joint function may require special consultation from physiatrist, orthopaedist, and/or neurologists familiar with skeletal deformities and muscle weakness. 20. Experienced physical or occupational therapists can help determine functional losses and how best to adapt.
Muscle stretching and joint range-of-motion exercises are important where there is muscle weakness.
Swimming is the best cardiovascular endurance and general conditioning exercise. Water should be warm (at least 90 degrees).
Discontinue any exercise that causes pain, weakness, or muscle fatigue, including walking. 24. Muscles weakened by polio respond poorly to vigorous strengthening programs. Programs such as weight lifting often aggravate the condition.
Each of you should know your own strength limits or endurance, and avoid going repeatedly to that limit.
You should avoid narcotics for any reason; aspirin is preferred as an analgesic for muscle or joint pain.
Occupational therapists can assess extremity function, daily activities, and the need for assistive devices to help achieve the highest level of independence possible.
Rest is the best known treatment for aching muscles. Moist heat, anti-flammatory medication, and avoiding exertion are also helpful.
Physical therapy – heat, massage, joint mobilization, and stretching exercises – can help chronic lower back pain.
Change of gait pattern, such as using crutches, may be needed to prevent recurrence of lower back pain.
You MUST learn to conserve energy.
Even though you were once rehabilitated, you must be re-evaluated and taught new techniques to replace those that no longer work.
Body positioning during sleep is important for post-polios with severe weakness and postural joint deformities.
Those with marginal respiratory reserve at sea level should be prepared to use respiratory aid when travelling above 3,000 feet.
Everyone with respiratory insufficiency is advised to get flu vaccination according to Public Service guidelines and recommendations.

Compiled by the Post Polio League.

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Aging with Post Polio Transcript

TRANSCRIPT FOR AGING WITH POST-POLIO

subject to change without notice.

Aging interventions

Anthropologist Ashley Montague once said “The idea is to die young as late as possible.” What you really need is a back-up body Unfortunately, we don’t have back-up bodies. In order to feel young, we must adapt to the changes in our lives. Today, I’d like to talk to you about making life changes in general and to suggest some options for change in the five areas that are the most effective with the least risk. These areas are, relaxation, nutrition, values and goals, communication and appropriate exercise.

Making life changes

How often have you said to yourself -“I really should eat better, I need to learn to relax, or I would love to be able to communicate better” and how often have you not made any changes. If you are like most people, you lost count a long time ago. You may even have lost confidence in your ability to make changes. You can make lasting changes. To do so, you need to consider your options, set goals to get started and evaluate your progress.

Before you plan specific changes, figure out why you might want to change an old behavior or add a new behavior. If you want to build relationships, maybe looking better is not as important as improving your communication skills. What is the best way to get what you really want? Don’t base major life changes on the latest self-improvement trend, magazine article, or TV ad. You wouldn’t buy a used car from the first salesman you met. Why would you take health care advice from somebody trying to sell you something? Don’t rely on individual testimonials. (If you only hear from the guy who wins the lottery, you may believe that a $1 investment will always get you a million!)

Do your research. Keeping an open mind is a virtue — but as the space engineer James Oberg once said — “not so open that your brains fall out” The sign says “Ye Olde wishing well” Does a suggestion seem to be reasonable. If it seems too good to be true, chances are it is. Have studies been done? What actually works? Has it been tried with people like you? (If your nerves are burning out, a vigorous exercise program is not for you, no matter how much good it did those university age students.) Let someone else take the risk and find out what doesn’t work. Check your “downside risk” before making a change. What are the costs in terms of side effects, money, time and energy? What is the least stressful way to make the improvement you have chosen? The greater the risk to you, the more evidence you need that an intervention is likely to work.

Set goals for change based on what you want out of your life. Your goals should be specific, measurable, realistic, and truthful. Make very specific changes one at a time. What? How? Where? and When? do you want to make this change. Set a definite time and place to get started To see if you goals are measurable, ask yourself “How will I know if I have succeeded?”

Be realistic, bring modifications into your life gradually. Your body is a wonderful, complex, living system with many checks and balances. Radical changes beget unexpected adaptations. (If you decrease your caloric intake too rapidly, your body will decide you are starving. Your metabolism will slow down. You will burn fewer calories. Not only will this diet

not work, but future diets will be less effective!) Keep changes small. Turn one large change into a bunch of small changes.

Be Truthful with yourself about your commitment to this change. Rats live much longer (2 or 3 times normal) on a very low calorie diet (the equivalent of 1000-1300 calories a day in humans). On a very low calorie diet, I may or may not live any longer but without the pleasure of food, it will sure seem like it. Ask yourself “Do I want to live with this for the rest of my life?” All change is stressful. Don’t waste valuable adaptation energy on something you don’t intend to live with for a long time.

Once you have made a change evaluate it regularly. Feel good about what you are doing right. Things won’t always go smoothly. Monday 8:30 AM: My first attempt to switch Evan to decaf has been a failure. Value your accomplishments and appreciate your willingness to try to make changes. If a week goes by and all you have noted are the missed opportunities for change, congratulate yourself on your deepening awareness. Listen to your mind and body. Has the change moved you closer to your goal? No matter how carefully we prepare we will all make mistakes. If

something isn’t working after 4 months, chances are it is not going to work for you. (Because I didn’t evaluate early, I stayed on a vegetarian diet for 2 years as I became weaker and weaker.) Learn from the experience, rethink your options and try something else.

When you decide to make your life better, plan your change based on your options. Set a time to make one small, permanent change. Evaluate the change regularly and appreciate the things you are doing right. If it is not working after 4 months rethink your options. “Life is like sex. If it doesn’t feel good, you’re probably doing it wrong” You can improve your life. Make that change now.

I reviewed many books and articles on aging and Post-polio Syndrome using the criteria I have just discussed. I would love to say that I discovered the magic pill that halts (or better yet reverses) the effects of aging. Unfortunately it just doesn’t exist. I was surprised by how many of the medications tried in PPS have been or are being recommended as anti-aging drugs.

Some of the “anti-aging” pills tried and found no better than placebo in Post-Polio Syndrome are Prednisone, Human growth hormone, IGF-1 Insulin-like growth factor (the active agent in Human Growth Hormone) and Pyridostigmine. Bromocriptine has been somewhat effective in treating fatigue but is only recommended after lifestyle interventions have failed. Large scale testing of Bromocriptine has not yet done in Post-Polio Syndrome.

What I did find was that the safest and most effective anti-aging interventions will also help with PPS symptoms. They are relaxation, good nutrition, working from your own basic values toward your own goals, improving communication skills and appropriate exercise.

As we go through this handout, mark things you are doing right with a star, options you would consider changing with a check mark. Later, rank the changes you would like to make and start working on the one that is easiest or most important to you.

Effective relaxation

I have considered marketing a pill to treat PPS. You would take it after lunch. Then you would have to lie down for 1 hour and relax completely. I am sure it would be a very effective treatment. It wouldn’t be better than placebo though.

Polio researcher, Dr. Paul Peach pointed out that “Weakness and fatigue are the body’s way of telling polio survivors to rest.” Drs. Bruno and Frick of the Kessler Institute found that polio survivors who comply with treatment–pace activities, conserve energy, take two 15-minute rest breaks a day, and use assistive devices (a brace, cane, crutches, wheelchair or scooter)-have up to 22 percent less pain, weakness and fatigue 18 months after therapy ends.

To treat your fatigue, you need to take time to rest. Nap (if possible) during the day, work fewer hours, and take longer vacations. Rest is the best known treatment for Joint and muscle pain. Relaxation is the classic treatment for stress. Using biofeedback techniques, you may learn to control the temperature of you extremities with focused meditation. Learning better breathing techniques may even help with respiratory insufficiency

The risks of relaxation are very small. There are no known side effects. It is free or at most the cost of a relaxation tape. It requires a relatively small amount of your time each day. If done correctly, it should give you more energy. This really does sound like the magic pill!

Specifically you need to learn a range of conscious relaxation techniques. There are many ways to achieve deep relaxation but the common ground is slow, full, relaxed breathing, conscious relaxing of the muscles and focusing of the mind on one specific thing so that thoughts and emotions become quieter and less distracting.

Ideally you should learn at least one 20 minute relaxation technique, one 5 minute relaxation technique and one 1 minute relaxation technique. Once you master these relaxation techniques you can learn to recognize difficult, high stress situations and use relaxation techniques to help you to perform better. Use relaxation over the long haul to lower your day-to day stress level and increase your awareness of your body and your emotions. Your physical and emotional pain is information essential to your health and well-being. Pain is a language, learn to understand it.

Another way to increase relaxation is to incorporate relaxing behaviors into your life. Behaviors like laughter can be very relaxing. It was a seventeenth-century British physician who said “The arrival of a good clown into a village does more for its health than 20 asses laden with drugs.” Norman Cousins discovered that ten minutes of the Marx Brothers could reduce tension for as long as 45 minutes.

Dr. William Fry, a Stanford University researcher, conducted studies during the seventies and eighties. He showed that both heart-beat and blood-pressure increase during “mirthful behavior”; (that is, chuckling as well as laughter). After this “excitement phase,” a “relaxation phase” sets in. In the case of blood pressure, for example, immediately following laughter both systolic and diastolic pressures return to “lower” levels than the original resting levels before the onset of laughter. He found there is a correlation between degree of relaxation and the intensity and duration of the laughter (with or without actual delight or entertainment), which demonstrates that the action rather than the mood is responsible for the shift. Forced laughter has the same benefit as real laughter. I need not emphasize the importance of laughing loudly at cartoons whether you

think they are funny or not. I believe in the healing power of laughter, Doc, but if you try to tickle me again I’m going to belt you.

Sleep is an excellent form of relaxation. If you find you fall asleep when you try to do relaxation exercises, it is probably your body telling you just how tired you really are. Music soothes the savage breast. “The Mozart Connection” by Campbell looks at the use of music for relaxation. The good news is you have a song in your heart. Massage (will be discussed in the healing touch workshop). It is one of the cornerstones of some Post-polio programs. Be careful not to wear yourself out getting to the massage session. Hot tub, hot bath, and whirl pool baths are another very good way to relax. I like the relaxation of a dinner out. I also find listening to ta very relaxing. I prefer murder mysteries. Loving is an excellent way to relax. It can be anything from petting your cat to hugging to sex. As Richard Bruno suggests, “Turn off your thoughts, turn on your body and JUST DO IT!”. Do whatever works for you. I’m not pointing any fingers, but all our bubble wrap has been stolen again. The important thing is not the behavior itself, but that you find it relaxing and give yourself permission to do it more often.

The reason I have put relaxation first and spent the most time on it is. “When you are up to your ass in alligators it is hard to focus on draining the swamp.” In stressful situations like the changes of PPS, blood flows away from the areas of the brain responsible for problem solving and information processing, impairing these faculties. Because of increased adrenaline flow, you will start to have trouble concentrating and difficulty staying still. This doesn’t leave you in very good shape to learn new skills or identify your values but you can still learn relaxation techniques.

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Information Pack by LPPN

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Dr Henry writes about Christina’s World

Dr. Henry writes about “Christina’s World”

In David McCullough’s Truman there is a recounting of the events that occurred in 1948 during the election campaign between Harry Truman and Thomas

Dewey. One paragraph in the biography reads, “It was the year, too, of

Christina’s World, a haunting portrait by Andrew Wyeth of a crippled woman

and a forsaken house on a bleak New England hill…that would become one of

the most popular paintings ever done by an American.”

The original painting is displayed in the New York Museum of Modern Art. Many prints of Christina’s World hang in living rooms around the country. There was a time when the print could be obtained with S&H green stamps. Because of the times, one would assume that any “crippled woman” would have been crippled by polio. Polio had become the great crippler of children and some adults since the great polio epidemic of 1916. What inspired Wyeth to paint this image of a disabled woman, alone in a field, apparently looking at her home? Was Christina posing for this painting or was she doing something very ordinary for her? Did Christina have polio? As polio survivors, do we identify with her dilemma? Do we wonder about what is missing? If she had polio and cannot walk, where are her braces, crutches or even her wheelchair? Why is she alone in this state of helplessness? Her arms, forearms and legs seem so thin. We cannot see her face. Is she frightened, scared, crying, screaming for help or just determined? Is she a young woman or even middle aged? Is she even a real person or just an artist’s creation? Like any good painting, each of us will see and feel various perceptions from this painting.

Christina Olson was a real person. She was born May 3, 1893 and died January 27, 1968. Except for the last two months of her life, she lived her entire life in the house on the hill in the painting. She lived there with her parents until they died and then lived there with her younger brother Al until they both had to finally leave the family home in November 1967 because of health reasons. The house is located on a hill at Hathorn Point on the coast of Maine at Cushing. Today, the house is preserved as a tourist attraction. Maybe some of our readers have visited the Olson Home.

At age three, Christina was already walking with an odd gait and had difficulty with balance. Her mother wondered if there had been some unknown injury, illness, or undetected birth defect. She encouraged Christina to practice walking straight on the seams of the linoleum on the floor. A few years later, her father took her on a six-hour buggy ride to see a doctor in Rockland, Maine. However, Christina stomped and protested and the doctor was never consulted.

She progressed through school and was able to walk the mile and a half to school despite her stumbling gait. The school only had eight grades. Christina was persuaded to attend an additional year because her teacher noted that she was intelligent and curious. The teacher hoped that Christina might become a teacher herself. Because of her mother’s failing health, Christina took over managing the sixteen room family home at age thirteen. She excelled in homemaking skills and was an excellent seamstress. She also

was the master of many nautical skills. Still, at age thirteen, her unnatural, stumbling gait was very evident.

Perhaps, the happiest years of her life were between ages 19 and 24. Many families spent summers in the area and in 1912 Christina met and fell in love with a young man who attended Harvard. They exchanged many letters during the winters and spent time together during the summers. In 1917, this young man stopped writing. He had met another young woman and married. In one of his letters to Christina, he had written “She can row a boat, climb a tree, harness a horse, and drive a carriage. She outshines me in everything here at Cushing.” The young man was a scholar, and Christina was able to communicate intellectually with him.

Christina’s disability progressed as she got older. In her twenties, she began to fall often. Her mother made her kneepads to wear under her long dresses. She would not tolerate anyone referring to her as crippled. She would state that she was just lame and could do most everything that anyone else could do. In 1918 (age 25) she enjoyed a trip to Boston. At age twenty-six, she could walk no more than three steps without grabbing an object, her hands were weakening, and she was experiencing exhaustion after ordinary tasks.

After avoiding doctors all her life, she consented to a medical evaluation and was admitted to Boston City Hospital in March 1919 for an evaluation. The doctors were not able to diagnose her condition and told her to keep doing what she was doing. A team of five doctors, including a specialist saw her. Some form of “electrical” treatment was considered, but not done. She was advised to spend as much time outdoors as possible. Christina was relieved, as she had finally done what her parents had wanted for years. Doctors had examined her.

Christina continued to be a master at dressmaking and was a wonderful aunt to her brothers’ children. By 1946 (age 53), she was no longer able to stand, had stopped trying to walk, and resorted to crawling. She resisted the use of a wheelchair despite the fact that her own father had begun using a wheelchair as early as 1922. She had a dear friend who lived in a house eight hundred feet away. She could crawl this distance

in less than an hour, but would arrive quite fatigued.

Betsy James, who grew up as a friend of the Olson family, married Andrew Wyeth. Wyeth became a familiar person around the Olson farm and many of his paintings involve Olson farm sites. In 1948 Wyeth sketched Christina as she crawled down the hill to visit her parent’s graves. The dress she wears in the painting is one she made and wore a few years earlier at her nephew’s wedding. Christina was amused by the fame of the painting. After Christina’s death, Betsy Wyeth stated, “She was a great friend who never asked for or expected anything and gave unconditionally.”

Christina Olson’s disability is unknown. Staff at the museum in Farnsworth, Maine simply state that Christina’s disability is unknown, but that she probably had some type of degenerative disorder. Apparently she did not have polio, but this is not known for certain. There is no history of a febrile illness resulting in muscle weakness. Currently at the Farnsworth Museum, there is an exhibit of photographs pertaining to the Olson House. Commentary about the photographs includes the following:

“Concerning the 1918 photograph of Christina and her mother, she had made the trip to Boston earlier that year to consult doctors on her increasing disability. She was told that the best cure for her condition was a quiet life in the country. Christina was stricken with what is believed to have been polio as a child.”

The description of her symptoms is somewhat suggestive of Charcot-Marie-Tooth Disease, which is a hereditary disorder that involves a bilateral weakness in the muscles of the lower legs. Friedreich’s Ataxia

is another possibility. Her disorder may have been a mild form of cerebral palsy. Polio still remains a possible explanation. Christina’s decline as she grew older is also suggestive of Post-Polio Syndrome, but the same decline might also occur with other neuromuscular disorders.

Whatever the disorder, Christina’s adjustment and denial of her disability are similar to that of many polio children who have grown to adulthood. Her bright mind, her unwillingness to accept help from others, her dislike of assistive devices, and her determination to be normal is very much like the resolve exemplified

by polio survivors. In your lifetime since polio, how do you see your world? In my mind, if I could call out to Christina in the painting, I imagine her turning her head and responding with a smile.

References:

McCullough, David. Truman, Simon and Schuster, New York, New York, 1992, page 621. [Amazon UK] [Other Online Bookstores]

Brooks, Jean Olson and Dalfonso, Deborah. Christina Olson, Her World Beyond the Canvas. Down East Books. Camden, Maine, 1998.

[Amazon UK] [Other Online Bookstores]

Information from Susan Snead, member of the staff at the Farnsworth Art Museum, Rockland, Maine. Farnsworth Art Museum web site: www.farnsworthmuseum.org

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

May 2000.

Originally published in the Central Va PPS Support Group (PPSG)’s newsletter, The Deja View, in the April/May 2000 issue.

The Wyeth Centre http://www.farnsworthmuseum.org/wyeth-center .
Christina’s World print from the Farnsworth Museum Shop (search “Christina’s World) [Online Purchase]

LincsPPN Adminstration: The links to book and print online purchase sites are provided for your interest and convenience. The Lincolnshire Post-Polio Network does not have any connections or arrangements, commercial or otherwise, with the sites listed; nor do the listings constitute endorsement or approval of any kind.